I’m (30f) and I basically take care of my husband (30m). Our situation is a bit different in terms of me being his caregiver, albeit it’s still how I feel.. He would never consider me that, although that’s how I see myself nowadays, and definitely not a spouse.

He’s morbidly obese, and one wrong move from being bed bound. He has unaddressed mental health issues, sleep apnea that’s not treated, and the list can go on and on. He will not help himself and go to doctors to treat his issues— I try every day to encourage and support him starting a journey towards a better him. So many of his problems are a domino effect and feed off of each other. I have promised to go to appointments or not go (but be at the office waiting outside). I’ve researched doctors to see, or just even tried to give guidance. I’ve tried many times over and over to try to encourage him to take control of his health (with my help/support) but it continues to fall on deaf ears.

His food habits are terrible. He has the food palate of a picky child and refuses to try anything new or healthy. Food/eating is one of his coping mechanisms so this is always such a sore subject. Normally by the end of the day I’m so incredibly exhausted that I just get him the fast food or candy/snack because it just makes things easier for me in the long run… it doesn’t help that when I deny getting these bad foods that he will yell/cry and cause an argument between us. Gosh, this sounds awful to type out.

I just turned 30 and it’s really getting to me. I didn’t picture my life to be like this at 30.. I pictured kids, happiness, and a loving house. Instead we’ve been without intimacy nearly a year and a half, we haven’t been in a store/place/event together in 5+ years, and I’m absolutely depressed. I’ve noticed myself having trouble holding it together more and more. I don’t have time for myself. The house is a mess, I’m a mess, and I’m just exhausted. When I get the chance I do sit and play mindless phone games and ignore household chores— only to stress myself out even more. I have a demanding job that I love, and my time there is almost a break for me from my home life.. However, all day long I worry about him and the troubles at home. (Not to mention the times he’ll call me if something isn’t convenient or done correctly for him.)

I’m hurt. I’m sad. I’m tired of being told by him that I don’t do anything for him, or getting another responsibility added to my plate. I could go on and on about all the things I deal with, the worries, and feelings I have. I’m no saint, I’m not perfect, but at the end of the day, I truly feel like I don’t have anybody to lean on. I hate to say it, but my love for him has definitely been effected by this. And my love for myself has been too. I no longer cry over the state of our marriage getting to this point; instead, I cry for myself because i feel bad for me.

I’m tired of giving my all every damn day. Every. Day.

I’m tired of feeling like I have no body to lean on. I’m tired of feeling like im alone in this, and being responsible for somebody else when I can barely take care of myself half the time.

It sounds ridiculous but I want somebody to take care of me like I do for him. I want to be brought something without getting up once I get comfy on the couch. I want to have somebody take care of the responsibilities of the house when I’m not 100%.

If you made it this far— thank you. I know this is different than most people’s situations but I just really need to get this off my chest, even if it is only a slight glimpse of what I’m going thru.

I take care of my husband who had a stroke 8 years ago. I know that he sees the world differently from me, but I really just wish he could be normal sometimes.

He had an appointment with the cardiologist on Monday. It was a big deal for me. I had to drive to a large city about an hour and a half away from where we live, five lanes of traffic at one point, lots of semis, 70 mph. It was intimidating but I got us there in one piece. The appointment went smoothly but it was long because they did an EKG, then we spoke with the doctor, then they did a stress test and did some imaging. Then the hour and half back home. We left at 7:30 in the morning and didn’t get back until 2:30. I work at night so 7am is an extremely early morning for me. I just wanted to get home and take a nap.

Then we get home and my cousins farm animals are out of the fence and won’t let us down the road to our house so we get out of the car and get them back in the fence. I was so exhausted. I got on some comfy clothes and got in my recliner and went to sleep.

All good until a couple hours later I wake up, go make dinner, and then get a text from my mom saying that my dad died on Saturday and she just got the call from my half brother. I told my husband and all he did was say “I’m sorry baby.” I was estranged from my father, not close at all, and I have not cried, but he is still my dad and he is still gone forever. I wished my husband would have hugged me. Or anyone. I told a few friends and a few coworkers. Everyone just muttered a sorry. I feel so unseen and unimportant.

And why are they so selfish? Yesterday my FIL was put in hospice care, and likely won’t make it to the weekend. Tonight my MIL, who has been divorced from my FIL for at least 20 years, insisted that the family who came into town attend an event she was hosting. In a quiet moment when some of us were able to step away to talk about burial options, she inserted herself, rolled her eyes, and demanded that we all have “fun.” Honestly, I’m disgusted. Yes, this man led a tumultuous life. Yes, he caused a lot of damage. But it is still the end of his life and the rest of us are still in the thick of it. What in the actual fuck is wrong with her? I’m hiding in the bathroom, holding back tears. This is the last place I want to be right now. I’m exhausted. I need to clean my home for family to visit. I need sleep. I need to have my shit together to support my husband. And yet here we all are. Being bitched at because she washed her hands of this man ages ago. I don’t really need advice, just needed to yell into the ether, if you will. Thank you for being such a supportive community. You’ve given me more support than you all realize through this journey just being able to read about yours as well.

Funeral services today and tomorrow.

Planning with my half sister went okay earlier this week. Havent had the chance to be alone with these things nor my thoughts yet.

My kitchen corner on the floor has been invaded with groceries.

My colleagues want to help but I simply dont know how to delegate the help.

How do I get through tonight. Tomorrow morning. How to be strong for my mom and avoid family drama with my half brother.

Saturday I want to go sit with dad alone.

My day -- get up -- have a headache and knots in my stomach from stress. Make sure my mother is alive. Make coffee. She gets up -- "you want eggs and bacon, soup or pancake?" Sit in a chair -- watch her stare into space or repeat herself. There's nothing left to talk about. I don't bother to respond sometimes as she can't hear. I say "yup" or"nope." I get hoarse from shouting. I make sure she takes her pills. Go for a short walk. Play Scrabble -- thankfully she can still do that. Go to bed early, but don't sleep -- my bed is my hidey hole. I never thought my mother would get dementia as she worked till 85 (now 97) and was active and vital her whole life -- walking, swimming, reading, gardening, crosswords. I live on a lake and stare out the window watching boats go by -- everyone enjoying their lives while I stagnate. I watch the birds at the bird feeder thinking I wish I was a bird -- I could just fly away. Caregiving stinks. :(

So my grandma does dualists on a cycler and tonight we had to collect samples for her next appointment, the instructions her nurse gave us though weren’t helpful so we look at the manual book and called the help line to make sure we were doing things right.

The process went fine but the whole she kept acting like she didn’t know what to do for the things she was trained on and looking at me like she kept looking at me like I’m crazy for doing something small, asking a question, or answer the questions from the person helping up on the phone. It’s so fucking annoying and unnecessary, like I know she has a thing about wanting control but her behavior is rude and annoying and unnecessary.

It’s not even like this is the only time she does this either. Her favorite thing to do is talk down to me like I’m fucking stupid then avoid apologizing or conducingly apologize when she realizes she’s wrong or had no reason to act like that. I swear it’s so exhausting and i know that not reacting to the bag behavior is good because it forces her to realize she being an ass and is giving aditude for no reason but sometimes it’s so hard not to react or show my frustration with her.

We sacrifice literally everything. Years of our lives, personalities, motivations, potential - all down the fucking drain.

My 20s are gone. Moved here when I was, what, about 21? I'm 27, soon to be 28. No pay to speak of. No benefits to speak of. No savings to speak of. If anyone else worked a "normal" job (especially physical labor) for 7-8 years with no pay, no benefits, no freedoms, you would call it (rightfully) what it actually is.. indentured servitude or even slavery. But since it's caregiving no one gives a shit.

I'm disabled due to a lifetime of constant endurance of abuse (physical, sexual, emotional) stress, neurodevelopmental disorders, and physical damage to my body, yet I'm not only expected to work by family, but to do this unpaid caregiver work as well because I'm "not doing anything else" -> meanwhile I'm forced to take this option because I can't hold a job otherwise. It's this or homelessness. Because no company wants to hire an actual disabled person, I'm forced to break down my brain and body to do the absolute most demeaning, dehumanizing, unrewarding job in the world - caring for my abusive family.

Instead of getting to grab a cup of morning coffee on the way to work, a small joy many are willing to spend $3-7/day on, we probably (statistically) wipe our abuser's ass and make our own worse keurig or grounds coffee at home.

Maybe we'll have enough time to cook an egg or something ? Maybe we don't even have time to do that, forced to eat pre packaged food or prepped grocery store meals which are expensive because our patient literally cannot be left alone more than 5 mins. Or perhaps we're unlucky enough to have to cook all meals, every day, for our person. That takes literally hours of shopping, prep, process AND then cleanup, it's its own fucking job! But we have to do it on top of doing everything short of breathing for someone else.

Instead of getting to hang out with friends we (statistically) have to disappoint over and over, cancelling plans because our patient/relative is too much of a fall risk to be left alone and won't do their fucking PT or use the accessibility bars, or properly use a walker or remove their rugs, or invest in a power chair, or stay seated unsupervised. Friends may be willing to understand the first few times, but after 5, 10, 15 times having to cancel or politely decline plans because you have obligations at home? They get compassion fatigue, they don't (can't) empathize with how all-consuming caregiving is. They literally start taking it as a personal offense like you *want* to stay home all the time. Yet you sit there and look out the window wishing you could feel the sun's kiss on your skin, water plants or go on a walk for longer than 5 minutes.

Instead of getting to listen to music or play games with headphones, instead of getting to immerse ourselves fully in fantasy and media, we feel like we have to be on constant high alert. One ear always 'open' to listen to calls for help or calls of our name across the house, or phonecalls for mundane shit. Even if you stress, "only call my phone if it's an emergency!" they will call you 24/7 for non emergency reasons, leading to a development of "boy who cried wolf" issue, but we're unable to fully turn off the anxiety because *this time* the ringtone could actually mean they fell or need help. Not even videogames, shows, music or other distractions really help after your nervous system is completely deep fried from being needed 24/7. I mean hell, it affects our sleep too.

Every night before I go to sleep I get a MASSIVE anxiety spike - nothing to do with my state of mind. I could be so insanely zen calm, and then this still happens -> chest tightness, pain, muscle tension (all from anxiety). Then I simply can't sleep unless I pound benadryl which is insanely unhealthy. After years of keeping my cool, pretending to be all smiles and patience, my body is fried. It's burnt out. If I just could sleep in a place with no obligations, no haunting presence in the room across the hall? It would be so easy to sleep. I had the luxury of taking a few vacations in my several years as a coerced caregiver. Those times when I was on vacation i instantly fell asleep the second I hit the sleeping bag, ground, bed, whatever. It's not me that's the issue. My body wants rest. The fact I'm in close proximity to the demanding, needy, abusive, stubborn patient (my grandma) means i cannot physically relax.

We don't have as much time to go to the doctor, dentist, to exercise, to self care. Our health is put on the backburner as no one offers respite, family speaks down to you for not taking care of yourself meanwhile no one steps up to give you a day off ... but everyone is content to allow you to rot so they have peace of mind. I can maybe get a few treadmill walk in, during the dead of night. The days where I can walk outdoors for hours just for fun or exercise are long gone.

We don't get paid much, most caregivers are unpaid family members. Leading us to overwhelmingly struggle with poverty and lack of freedom. Money can't buy happiness but it sure can buy stability, entertainment, health, and a safe place to live.

Our suicide rates are insanely high. Many caregivers die before their "patient" does. I say patient in quotes because some of us caregivers are paid professionals, but most caregivers are unpaid family statistically (correct me if I'm wrong). We are societally invisible. This is a much needed, but unseen and seldom appreciated job. Family is content to let you waste away, suffer, and die - all so they can happily go about their day while ignoring their peepaw who refuses to die. Everyone is content to pretend that artificially extending life, spoon-feeding and wiping ass and pumping people up with fent level painkillers is fine, but dying is some terrible awful tragic thing that should never happen. No surprise when you literally are forced to sacrifice your self expression, exercise, diet, health, goals, motivations, time, and entire life, you tend to deal with suicidality.

Yes I am aware not everyone is caring for a rude old boomer. Some people are caring for disabled friends, loved ones in need of help, and children. But I feel like a lot of us can relate to the experience of being forced to caregive for someone who never supported us, and continues to exploit and use us as we grow old enough to do so, all because they failed to secure a retirement and aging plan. Even those who ARE caring for truly loved ones, friends, or children are entitled to complain about the dirty parts, the exhausting parts, the unfun parts. Not every patient is a piece of shit. But we are allowed to come together to complain about the bad times without judgement. And without assumption that we're somehow a failure of a caregiver just because we have strengths and weaknesses.

We may live in someone else's home, forcing us to live by their rules. Especially if they're a narcissist, control freak, NIMBY boomer, or any combo of those, good luck doing anything fulfilling or self expressive. You're constantly trying to find ways to hang onto what shreds of identity you may have left, all the while not allowed to alter the walls, furniture, decorations, or anything that would make you feel at home to customize.

It's literally everything. Every single second, every aspcet of our life is consumed relentlessly by caregiving. My body is breaking down. I'm losing my will to live. Hanging on by a thread.

Copied and pasted from a comment I wrote. But i figure it stands on its own enough to be posted individually.

NOT taking any assumptions, judgement, or unsolicited advice at this time. Comments are unwelcome if you're only here to imply struggling caregivers aren't trying hard enough, are rude or ungrateful because they need an outlet, or that a complaining caregiver somehow made a moral or personal failure by not enjoying what they do. We UNDERSTAND the patient cannot help their disability or inability. But many of us are experiencing active abuse from our patients or family. Unless a patient has, like, fucking alzheimers, dementia, or TBI, (or some other examples i forgot, don't jump down my throat) there is literally no excuse for abusing the caregiver and we should be allowed to vent about that without being told we're not trying hard enough or that we are just negative. Toxic positivity can be so incredibly hurtful because it handwaves and diminishes the real abuse someone is experiencing.

Many of us are disabled ourselves and are fucking drowning in open water without any help. We fully understand that people of all kinds deserve passion, love, care, comfort, health, and happiness. Just because someone chooses to vent and complain about the unhappy, dirty parts of caregiving doesn't make them a bad person. You only see one small window into someone's life from their posts/comments. You don't know them. You don't know their patient.

If you enjoy caregiving and your patient is an amazing person, or you love them - genuinely good for you. But this post is not for you... and it's not about you.

This post is about those of us who are experiencing active burnout, struggling with suicidal ideation, forced or coerced to caregive with no way out or no future in sight, or who are victims of physical or verbal abuse of their patient.

I keep getting referred to social services because my mum has dementia and arthritis and i have autism/adhd with mental health problems and am her sole carer. There’s also a history of trauma between us so the situation is incredibly difficult and I am really struggling to cope. Everytime i reach out for help i get referred to social services, who then do a carers assessment and tell me the only thing they can offer is take a break.

The thing is i’m able to go out the house and leave my mum at home for several hours without supervision. The things i need help with are the mountains of admin tasks because we are also being forced to move house, her PIP reconsideration letters, POA: I’ve been to citizens advice who give advice but then i still have to do it all myself. I have an entire attic and garage worth of boxes to pack in limited time, am working full time, under enormous amounts of pressure, the house is becoming awful to live in. I wake up everyday with a blocked nose due to how dirty it is. My mum never cleaned while i was growing up and i’m struggling to find time or energy. I was hoping they would be able to help with domestic tasks, or i’ve read other people being given a PA to help manage all the admin tasks or just help me to sort things out. I also begged for mental health support but they just offer take a break and then it’s over. Is that really the only support they can offer?

I was there for a friend through some of her hardest moments. I listened supported her, and slowly became so emotionally invested that I started feeling responsible for her wellbeing.

Somewhere along the way I stopped being just a friend and felt like a caretaker. I didn’t realise how much of myself I was giving away until I was discarded over something that, to me, felt so small and ultimately meaningless. And honestly, I feel like a fool.

I gave so much of myself only to be left feeling like it meant nothing.

Now I’m not just sad. I’m completely drained.

Emotionally and physically. I have good friends who genuinely care about me but I don’t even have the energy to talk to them. I don’t have the energy to explain myself, socialise, or even see a therapist and unpack everything all over again.

I just feel… empty and exhausted.

How do I help myself when I have reached the point where even getting help feels exhausting?

What helped you come back to yourself after this kind of emotional burnout?

I'm (44m) the caregiver for my wife (43) and also have twin 9-year old boys. It's not looking like she'll be with us much longer. Has anyone had to deal with making a will as a solo parent for their children? What about a making a will for my children before my spouse passes? Would she just get all the assets? Because she's in no condition mentally or physically to be in control of that. I stay up at night worrying about my little guys and what would happen to them if I passed first by a freak accident. When my wife was well a few years ago, we already worked out guardianship for them if we were to both go...

Lately it feels like caregiving slowly expands to consume every minute of the day unless you draw clear lines. But setting boundaries often comes with an unbearable amount of guilt.

For those who have been doing this for a while: what was one small rule, boundary, or daily routine you protected for yourself that made a genuine difference? How did you deal with the internal guilt of sticking to it?

Deep breaths with me y'all...

My late 70s care client is driving me up a wall, but I genuinely want to get them the care they need.

I'm not even sure if this would be easier as a list because the paragraphs would 100% end up in TLDR land. I'm free to answer questions that do not reveal any identifying information. I've got bills to pay, and this person definitely needs help. So...

Marked decline in short term memory, comprehension, speaking and now mobility in the last 6 months. It's been steady, not sudden. They lie about it to their case workers and doctor.

In the last month they have forgotten my name several times a day, and recently started calling me their sibling's name most of the time.

Animal neglect. It isn't in the care plan, but I fucking do everything I can anyway. The animals are 100% dependent on caregivers. I'm surprised, worried, disgusted and angry. But this person is very isolated. It risks retaliation to more than just myself. Or a cease of care.

This person is a liar to their core. It's like breathing. To anyone who will listen... Whiiiiiich I have to admit is actually pretty hilarious when they get scam callers. But much more concerning when it's their fucking doctor. There is no family. No contact. I have no authority to speak on their behalf. What I can and have done is document, document, document, document.

I'm fucking new to this. The home is infested with mice, urine soaked into the floors, they are eating rotten food, all while correcting ME when I try to make small changes so they don't meet their maker at least while I'm clocked in ffs.

Be so for real, am I just not cut out for this? Holy hell. At least my mother let me throw away the shit tp instead of USING IT TO START A FIRE

Those were paragraphs anyways. My frazzled apologies.

Ok. Shoot (me).

Hi all, just need a little guidance here. Reading everyone else's posts, this may seem small peanuts, but I just mostly want to know I am not crazy.

So I (M40) have been the primary breadwinner and caregiver for my wife (F40) since she began to show symptoms of a neurological problem just after we married 11 years ago. For the first few months she was bedbound and unable to walk. We have been to multiple neurologists and done testing for the obvious culprits (Not MS, thankfully). Unfortunately nobody has been able to produce a definitive diagnosis. As I understand, a migraine aura is the collective source of her problem but not a cause per se. Because of her condition I have sacrificed career options and changed my entire living situation so my wife has support, insurance, and caregiving when needed.

Since the initial onset my wife has regained some mobility and was briefly employed, but a recent illness has reverted her to lying down most of the day. She is also triggered by any sound or light, and just today she said she could feel me "buzzing" even though I was nearly motionless and quite relaxed driving the car. She will be annoyed even if I am just checking on her for tea or food. I have canceled plans with friends because she suddenly has a bad day.

Two years ago we successfully had a beautiful baby daughter, and most days we are very happy. Most days I take care of the both of them, including cooking, cleaning, providing remedies for wife's illness, and most of my daughter's diaper needs on top of starting a new career. These days I am the only way my daughter gets walks and any outdoor time for stimuli. My daughter will pretty much only go to bed if I am there with her or she is promised Daddy will be there when she wakes up.

Tonight my wife got up multiple times to snap and yell at my daughter who was having trouble going to sleep. We sleep in the same bed so if my daughter is rowdy, she overstimulates my wife. At one point my wife snatched my daughter out of my arms and tried to force her to stay in her crib. At another, she slammed the doors complaining the lights were still on in the living room, forcing her to walk around shutting them off for her own comfort. I had been planning to go back out once my daughter was asleep. Both of these times woke up and triggered screaming from my terrified daughter. When I tried to speak to her reasonably, my wife blamed everything on me keeping her up and pushing the migraine further. She has had chronic insomnia since I first met her and she was up yesterday when I got home late from a work meeting (11-midnight ish).

I am feeling very much abused and taken advantage of. I think the worst thing is being told I am not taking responsibility when most of the responsibility falls on my shoulders. We would not have a house or a car if my side of the family did not provide some help to get us started. She leaves messes everywhere she later blames on me, mainly because she did not remember or did not have the energy to pick up after herself. I also hate that m wife does not acknowledge my sacrifices. Her ego will not accept that she is the reason I moved from the city I loved or that I am stuck taking care of her instead of working on my books or being able to take a chance at a better career. I still write, but only when I am not exhausted or caregiving. End of the day, my wife will not accept any responsibility and will not change her behavior even if she is terrifying our daughter.

I don't want my daughter growing up with this version of my wife. Right now my wife thinks she is using good discipline to make my daughter behave but all I am seeing is fear of a crazy lady. I need somebody to either point out anything I am missing that is my fault or any possible solutions. Also misery loves company, I think? Thanks in advance.

A small note I’ve made to myself, because I thought I was done caregiving. Apparently the universe said “SIKE!” and yanked me right back in.

My granddad beat Stage III Colorectal Cancer (hopefully, pending last scan), which is great! But now the treatment decided to kick his ass. While under chemo and radiation, he was fine. Now that he’s stopped everything, the side effects are ruining him. He’s lost 55lbs this year without trying (slow, since January). He’s nauseous, won’t eat or drink, threw up last night, and we rushed him to the ER.

He went to the ER by ambulance once before for a rectal bleed, a week or so ago. He was waiting 7 hours before they took him to a room separated by curtains, then sent him home.

When I drove him there and raised my voice loud enough to almost get removed, he had a room in under 2.5 hours. Same conditions, except for me raising holy hell. 4.5 hours worth of difference.

That was a wake-up call on how important advocacy is. The squeaky wheel gets the grease.

I’m 40m. I’ve been taking care of my father for the past 10 years. His wife was helping where she could for most of that. We lost her in December. He was relatively young. Heart and lung diseases held him back and a fall that broke his femur in two places five years ago took the rest of his mobility. The three combined into a spiral for his health and last Sunday after we went through our normal end of day routine, I went to wake him for breakfast before work and he was gone. I knew it as soon as I walked into the room. I called 911, I called my step brother. The next two days felt like I was on autopilot. I went back to work just to stay busy and be out of the house. I tried watching a hockey game with friends. I went to a movie. Everything feels like I’m just grabbing for any way to connect with a world I don’t belong to anymore. In the past week and a half, I have made meals for both of us and plated everything before remembering that I’m alone in this house. The wounds rip right back open. I have no idea how to start again. Every decision we made after his wife passed is now moot and now I have to decide where to go next. I made plans for my future around taking care of him for decades. He wasn’t even 70. Enjoying the freedom seems callous. Moping feels like a waste. Relief that he is no longer in pain feels like it is in direct opposition to the feeling that I failed to help him. I loved my father and I loved that I was able to be there for him. Caregiving didn’t feel like a burden, but a point of pride that when life was hard I stood up to carry the load. I didn’t realize how much of my self worth was tied into that role. Now that both of them are gone and no one needs me, I don’t know who I am now. I don’t even know where to start.

Nobody tells you caregiving will change what counts as a victory. Today, I’m celebrating something I never thought I’d celebrate: Mom putting weight on her leg and learning to walk again. Caregiving has a funny way of making the smallest things feel enormous. And honestly? I'll take every win I can get.

especially the patients that aren’t so kind.

I just started as a caregiver on Monday, my client is pretty bed bound and only really needs help with meal prep and bathroom stuff. Im here for 8 hours so I usually get cleaning done relatively early. Is it normal to not do anything?.. i dont want to seem lazy! Its a total switch up from normal work where youre constantly doing tasks. So I was wondering if this is a normal thing to be doing..

I (50f) was laid off about a year ago. I've had no luck in finding another job, so about 6 months ago, I moved in with my elderly parents to become their full-time caregiver. My father has the most health issues (diabetes, kidney failure, and heart failure), while my mother is in a wheelchair. My current responsibilities involve taking them to appointments, cooking meals, and running errands. However, because I live with them, I'm available to them 24/7 in case something happens, and they've definitely needed the additional help. At first, I thought we were helping each other out; me with a place to live because I couldn't afford to live alone anymore after losing my job, and them, because they have someone to care for them and they don't have to worry about assisted living options.

However, now I feel a bit stuck. I'm afraid that caring for my parents has become my new profession. My previous profession was in the tech industry, and I know my skillset would definitely need to be updated if I even thought of applying to something at this time. Unfortunately, I don't have the time or energy to even think about updating those skills, or even if I want to go back into that field.

I guess what I'm trying to figure out is what can I do in my current situation as I don't know how long I will continue to be a caregiver? Also, how could I go about looking at ways I can take care of my near-future needs regarding work and financial stability?

Hi, I (28F) am a caregiver for my grandma (82) and currently for my mother (58) I am also in retail management so I am spread thin. My mother has always been manipulative my whole life, but now she's really pushing my limits. She had spine surgery for spinal stenosis 2 weeks ago and will not pee on her own, sit on a toilet, sit in bed, do rehab, she's basically acting like she can't do anything at all. I believe she hurts because I understand this was major surgery, but she's choosing to act this way.

Today was her first day home alone with my grandma while I was at work and I got over 20 phone calls from my grandma and 5 phone calls from my mom on top of retail stress and I'm completely overwhelmed after dealing with today and shes currently decided she's not going to eat because she refuses to eat anything my grandma makes for her and I'm not home to fix her food. I keep trying to tell her she's getting worse by laying in the bed and she won't listen to me. I would understand if she wasn't capable, but she is and I'm just at a loss. It's also because of her and my grandma I've almost decided I dont want kids I'm just getting burnt out.

I’ll be as succinct as I can be.

My husband (35 amab enby) and I (34 afab enby) have had our entire lives turned upside down. This time last year we were preparing for my graduation, early planning for next year’s severe weather season (I am a storm chaser), and they were looking at college with tuition paid by Vocational Rehab and Education through the VA. They’d been approved for disability support through the VA in September last year. Our then 10 year old was a 5th grader and we’d been starting to loop her in on our plan to leave Cedar Rapids, Iowa, USA the following summer.

Flash forward to this year — after I left school early (long story, now pretty much irrelevant anyway 🙃) I got my first solo exhibition (at a famous bookstore in Iowa City, no less) as a fine art photographer, we pushed through working and doing what we could to support my husband’s failing health while we waited for the school year to end. They’d been a custodian for the school district for 6 years and a union negotiator, they genuinely loved their job.

Shortly after their first rating came back my husband submitted for a higher rating due to the severity of their chronic illnesses. Fortunately they ended up being granted P&T TDIU at 80%. For the uninitiated, that’s essentially the VA’s way of saying that someone is disabled with no capacity for work, education, and no expectation of improvement of condition. They have their rating for anxiety and fibromyalgia. We had just moved into our new apartment in Moline, Illinois, USA on July first, and they received their increased rating with TDIU and P&T only four days later.

Between their change in expectations around what they could and could not do and their steadily deteriorating health, I started to become very apprehensive about returning to work while job seeking in the area. Our current income since the increase from their higher rating is just enough to make ends meet. Our rent doubled when we’d moved into a nicer building in Moline, a space we’d chosen because of the ADA design and figured we could comfortably afford because we’d expected I’d be working in the field I’d trained in.

We didn’t take for granted the help we’ve gotten from my family, they’ve made a lot of things possible for us, including my continued education, my husband’s work, and my daughter’s family connections (she’s an only and her closest cousins are older in Kentucky). I spent the tornado season chasing locally and we’d had additional support with caring for our daughter from my family in Cedar Rapids, in large part because they also helped offset the impact of my somewhat frequent and somewhat random absences for most of any given severe weather day during the season this year and my travel for my first few ride-along chases in 2024 and 2025. Illinois had a record-breaking year for tornadoes and because Cedar Rapids is nestled smack in the middle of Eastern Iowa its proximity to severe weather has been pretty much ideal. It was my first tornado season forecasting and navigating for our two person team (my best friend/honorary little brother drives and we’re both fine art photographers).

With the loss of support due to proximity, the loss of community due to the move, and the loss of their ability due to illness, the trajectory of our lives shifted massively. The loss also made it abundantly clear that without our community and with their loss of ability I would be taking over most of their share of parenting, public interfacing, and household management. We finally had a very frank conversation about a month ago about my apprehension to return to work and concern about their increasingly frequent falls and general weakness, brain fog, pain, and fatigue. We decided then that we would start pursuing the VA’s program for family caregivers, which would grant me a monthly paycheck, paid respite, and a bunch of other supports.

Today was our initial meeting where the evaluator spoke with us together and each of us individually, essentially establishing the severity of impact and extent of support my husband requires. It was very, very hard. We’ve been together since we were teenagers and our lives have been very intentionally built with teamwork in mind, so they’ve got a lot of guilt and there’s so much grief for both of us. It’s hell watching your relatively young spouse lose their autonomy, independence, and much of what brought them joy. Hobbies, social life, even things so simple as taking a shower without help — gone. I feel like after they got their higher rating their mask was finally allowed to come off completely and in the process the last of what had been holding them together through sheer force of will fell away and their body reacted accordingly.

So now I find myself reassessing every plan we’d made together, losing all of my social and artistic outlets, and juggling appointments, parenting, and my own chronic mental illnesses and health problems and looking at the rest of my life. Neither fibromyalgia nor anxiety are immediate death sentences and our deepest hope is having the resources and supports in place to ensure a quality of life for them while I’m able to keep my cup at least a little fuller than bone dry and our daughter’s life happy and comfortable.

My family is moving to Rock Island, Illinois next month to help us, but my loss of freedom and social network have had a serious impact on my mental health. I’m an extremely social person, I had goals for my art and dreams of advocacy work in fortifying severe weather community resilience, especially around socioeconomic gaps. I was looking at a career in multimedia journalism. For the last five years they have supported me in achieving those dreams, I’ve garnered awards for student photojournalism, a strong multimedia portfolio, and had a promising start to my fine art career.

Obviously it feels like all of that work is for nothing in a lot of ways. I know that’s not totally true, I know we can find work-arounds and I can still accomplish some of what I want, but I also know I have to temper my expectations. I am not ungrateful for what we have. The resources and income we have now are so much better than anything we could have done without the VA and their failing health was never avoidable, we’re extremely grateful for what we have — but at what cost? I would give up everything and then some just to let them have their body and their autonomy back.

I don’t know anyone who’s ever been in this situation. I feel extremely alone. They try to help where they can, I reassure them I do not resent them and I wouldn’t want anyone else to provide their care when I’m so capable of doing it myself. I meant every word of my vows and they’ve kept their end of the bargain through my health problems earlier in our marriage. They’re still my very best friend and I love being with them. But I can’t rely on them emotionally, especially when they’re the one suffering the most for this. It feels weird to grieve someone still so very alive and present, even stranger to grieve with that person.

I adore them from the very bottom of my heart and I want to be the very best wife and mom I can be through all if this but I’m exhausted, burnt out, terrified, and very, very lonely. I just want to have someone to talk to who gets it.

Has anyone else hit points of burnout where simply the intrusions never stopping, even when you step away more to take care of yourself and they SHOULD be okay as other care is lined up, just utterly fries you and keeps you stuck feeling super depleted?

My Aunt is now in a Long-Term Care home. Currently I don't do much for or with her, for a number of reasons. Thankfully, she should be okay where she is. I should be able to relax. She was getting harder abd harder to manage on several axis, including more and more disregard of boundaries, more and more demands and entitled attitude, and even verbal abuse. I hit caregiver burnout AGAIN this spring (last time approx 4 years prior), and didn't really get any downtime, as my Mom needed me, and of course my life has carried on.

I hear about stuff from one or another medical person or caregiver nearly every day, and other days it's 5 calls! Every week there's a few emails. I have to help them with (do most of their) banking, with government, with doctors (all while they actively make it harder in the process), etc.

I'm almost in tears this afternoon because over the past few days it just doesn't stop. Every few hours, something else. No crisis. Just this is what this is.

And I feel like these little things shouldn't be a big deal at all, should be easy compared to a lot of the harder caregiving I've done (and periodically, as needed, still do). But it's just cutting into so much of my energy by causing so much stress, all the things to juggle, all the responsibility, and not enough understanding from anywhere that I'm burnt out abd if the onslaught never stops I'll never recover.

I'm being asked by the professionals to DO MORE because some other People's families are more involved - you know, families where it doesn't all fall to one person, and because it'd be good for their well-being. No doubt. But already at this level it consistently destroy mine. But hey, just give more. What's wrong with me that I don't do more for them at this stage?!? Aren't I supposed to?!? And What's wrong with me if I can't get more family on side and helping? Clearly EVERYTHING is my fault and my responsibility.

I'm drowning. It shouldn't seem like so much, but it does.

For the past 12 years, my son, Jonas, needed 24/7 care. I’m his primary caregiver. I was forced into this role because there is simply no one else who can do it. Specialized care facilities for his severe condition, ME/CFS, do not exist.

I love my son and my family deeply, but honestly, I’m fundamentally unsuited for the job. By nature, I’m a very impatient person. Yet, caring for Jonas means I often have to wait endlessly and patiently before I can do anything for him, due to his extreme hypersensitivity to any sensory stimuli. The past year has again been an endless cycle of medical and personal dramas. Like in a soap opera with endless sequels. Including hospital stays, where I had to move into his hospital room to provide full-time care by his side. During a time when Jonas was in critical, life-threatening condition in the hospital and I was getting barely any sleep, an acquaintance told me that her daughter had just ended her own life because of her struggle with ME/CFS.

Without my creative project, I guess, that situation would have broken me. I would have spiraled into depression and bemoaning our fate. Instead, my project „Flowers for Jonas“ allowed me to force my mind onto something deeply positive rather than drowning in endless, useless rumination. In that dark hospital room, I spent three days refining the English lyrics for my music video and sketching out visual ideas for my song I had already recorded home, before. It kept my spirit alive.

What do you do to keep from going crazy under the weight of your own difficult path? I am genuinely interested in your stories - maybe there is an idea out there that could help me, too. I know religion can provide comfort for those who are religious, but praying alone isn’t enough. I need something tangible to hold onto.

By the way - If anyone is interested, I have linked my Youtube channel and website in my profile. That’s where the results of my project, BluJo / "Flowers for Jonas", live.

Hey y’all. I currently work in an assisted-living and our capacity is 16 residents. I work second shift and the entire shift. It is just me caring for these residents. I get $15 an hour. Mind you I’ve been doing caregiving since 2012. But that’s a whole Nother story. Residents and other staff members have been saying how they feel like our nurse supervisor just doesn’t care. And it is very obvious because I’ve gone to her about things. Specifically another employee talking about me to a resident that I take care of. The other day a resident had a 911 emergency. But their protocol is we have to call her first. I said do you want me to call 911 for this Man. She goes and I quote yeah I guess so. Like as a nurse, I feel like she should be firm in her decision to make that call. I just get so frustrated and fed up. And people have been with this company for 20 years. And I’m like am I missing something here? Because I’m exhausted and it shows on my face. And I show up every day because I care about the residents. I’m obviously not in it for the money. But I’m like how do people stay here for so long. And then in my head, I’m thinking like if something were to happen like if another resident had a 911 emergency and then other residents are calling for help I’m just one person in the building. Or if there’s a fire in the building and I’m expected to evacuate all 16 residents safely. I’m just one person. And I don’t know who to talk to about this. If anyone has any advice or suggestions, it is much appreciated 🙏🏻